Oxford launches campaign to simplify understanding of neurodevelopmental disorders

The Department of Paediatrics at University of Oxford has launched a new public education campaign aimed at improving awareness and understanding of neurodevelopmental disorders through a series of family-informed animated videos.

Called “Genes, Brains, and Breakthroughs”, the initiative brings together families, clinicians, researchers and patient advocacy organisations to explain complex subjects such as neurodevelopment, genetic diagnoses and emerging treatments, including gene therapy, in accessible language.

The campaign comes amid growing demand for reliable and easy-to-understand information on rare genetic and neurological conditions, particularly for families navigating diagnosis and care. The educational resources are also intended for teachers, healthcare professionals, policymakers and the wider public.

At the centre of the campaign is a co-created series of 16 short animated videos developed around real questions raised by parents and carers. According to the Department of Paediatrics, the videos seek to bridge the gap between scientific research and the lived experiences of families dealing with neurodevelopmental disorders.

“Families consistently tell us that accessible information and public understanding are among their greatest unmet needs,” said Dr Narjes Rohani, who led the project. Rohani said the campaign aims to reduce stigma around neurodevelopmental disorders and make advances in therapeutic genomics more understandable and meaningful for affected families.

The videos were developed by the MRC Centre of Research Excellence in Therapeutic Genomics, an international collaboration of scientists, doctors, patient groups and industry specialists hosted by the Department of Paediatrics. Advocacy organisations including FamilieSCN2A Foundation, GRI-UK, SLC6A1 Connect UK and UNIQUE partnered in the initiative.

Melody Kisor said families affected by rare diseases often struggle to find trustworthy and comprehensive educational resources. She described the project as an “inclusive, patient-centred collaboration” that involved advocacy groups and families at every stage.

“These brilliant educational and communication tools will help caregivers with their own knowledge, but also in communicating critical information to extended family, teachers, and others in the care team,” Kisor said.

The campaign also reflects frustrations many families face during the process of genetic testing and diagnosis. Kate Bailey, whose 15-year-old daughter Tilly has a rare chromosome disorder called Tetrasomy 9p, said her family received little support when the diagnosis was delivered.

“Tilly was diagnosed at age two and a half, after two years of tests,” Bailey said. “I think these videos are an invaluable resource for parents and also, importantly, an educational tool for the wider community.”

Another parent contributor, Helen Newton, said her family waited more than two years to receive genetic test results for her son, who was diagnosed with SLC6A1 and SCN2A gene mutations.

“One of the biggest challenges with rare genetic conditions is that many healthcare professionals simply do not have enough information about them,” Newton said, adding that families often have to search online support groups for guidance and community support.

Professor Stephan Sanders said navigating genetic testing, diagnosis and therapies could be “disorientating” for families, and expressed hope that the videos would make information about genetic medicines easier to understand.

The campaign’s educational resources will now be distributed across digital platforms, schools, healthcare settings and community networks to encourage greater awareness and inclusion for people living with neurodevelopmental disorders and their families.